NHS Wales Questionnaire and Questionnaire Response

The following outline use cases were forwarded by Ann Wrightson, Head of Information Architecture, Aneurin Bevan University Health Board.

There are three areas for which work is in hand in NHS Wales using Questionnaire and QuestionnaireResponse. They illustrate the variety of uses already emerging for Questionnaire/ QuestionnaireResponse. Our expectation for UK FHIR Core is that it will provide a simple common ground for a wide range of use cases, with specific Questionnaires standardised at and for the scope of use (e.g England, SE Wales regional network).

The three areas are outlined below:

Implementation of the PRSB standard “About Me” in the NHS Wales App – in Welsh and English

• Patient/citizen facing data capture needs to be made available in Welsh and English in Wales.
• Design discussion on this as a first of type for such data collection determined that a good way to do it was to hold the English and Welsh variants of text used in a Questionnaire.item as language specific designations of the corresponding concept in a CodeSystem.
• This enables equivalent access to each language variant (and any number of variants), switched using the language code (‘en’ or ‘cy’ in this case). More information relating to the PRSB "About Me" standard is available online on the PRSB website.

Data collection of Patient Reported Outcome Measures (PROMs) in FHIR, against an NHS Wales data standard (DSCN)

• PROMs data from all sources is collated for analysis, with FHIR used by some but not all data sources.
  • The Questionnaire.item.linkId contains the corresponding data field identifier as defined in the DSCN.
    • This identifier supports collation of data from various sources and across a wide repertoire of PROMs
  • Responses with rubrics are handled using CodeSystem/ValueSet
  • An issue that has arisen in this context is a requirement to send predefined metadata (defined as a set of name/value pairs) alongside FHIR content.
• A PROMs submission would contain several QuestionnaireResponse resources, one for each separate question set completed.

Read more information about PROMs.

Data capture from users with UX driven via Questionnaire/QuestionnaireResponse.

• The first item "About Me" above is one example of this, however there is other work also in progress.
• In this context a number of the SDC extensions have proved useful, and we suggest they are included in UK Core.
• One project in particular has found it essential to tie data items collected via a Questionnaire to a data catalogue (not a question bank), where the FHIR Questionnaire/QuestionnaireResponse realisation of a data item is set up alongside other realisations in FHIR and otherwise. A question bank does not give the same level of control as a data catalogue.